The Good Book

"

Some Day, This Pain Will Be Useful To You..."

-Deanna of Walking Dead, Quoting Ovitz

To help the sufferers, to assist the survivors.

Pray4Jason-  The Book

Release Date Summer 2017

Knut The Polar Bear

I found this article which helps go into detail about Anti-NMDA Receptor Encephalitis. It goes into the technicality of the disease and shows pictures. It gets clinical to the point that your eyes may cross but if you really want to understand the disease - pay attention.

Knut The Polar Bear had ANTI-NMDA Receptor Encephalitis

Apparently Knut the polar bear had it and it caused him to drown. A polar bear who swims everyday drowned because of this disease. Let that sink in a little - and use your imagination as to what this disease can do to humans. The disease itself has not killed anyone yet. People have died because of all the complications that come up from the disease.

Fatigued

I haven't slept much the last few days. A lot is going on. Procedure was delayed again. I am upset and frustrated and there is nothing I can do. With the right last name I doubt I would be going through this. He was supposed to have this procedure done last Thursday but apparently that department is the busiest in the hospital. Jason was not considered an emergency. Here is sat in bed for another 5 days to try to be

Today You Don't Scare Me

The moss has grown to the point where The Invasion Of the Body Snatchers is almost complete. The difference between them and me remains that I am emotionally invested here. But my poker face is back today. I don't well up and cry when they tell me all the scary things they propose to cut or implant or inject with. I am not letting them see me cry today. Today I will not appear compromised and emotionally unstable because today - although on little sleep I feel sound. I feel able and I feel completely with it mentally - in the bizarre universe that is this prestigious hospital.
I am terrified.
The tremble is real and my insides are racing with anxiety that makes me wonder how I am still able to walk and talk. My words to them are deliberate and in a tone where theirs change depending on the way they wish to attempt to sway me.


I am making one decision today. The decision to agree to allow him to rest.
Once we clear the complications we will be gold.




Dear God,
By your stripes he shall be healed.
Amen.

Turning The Page on GoodBye

As my husband would say every time he realizes I have not written in a while, "not writing to them is like leaving them with their ass hanging in the wind."


I could not help myself. I am from NY and sometimes we need a NY minute. The PTSD is strong and I am wading through it.


Jason is coming home.


Today.


Reread that and let it soak in and then you will understand why I needed a NY minute. The recovery I promised has come. There is still therapy and mental deficits we need to watch for. He could have any number of issues now, ADD/ADHD/Dyslexia. We are getting him therapy to search these out and know if they are something permanent or temporary or if they exist in him at all.


The PRAY4JASON Book is coming Summer 2017 to help all of those with this damning disease and offer help and support on what to do and how to do it.


Jason is amazing. He is talking, and doing everything he always did. He was wheeled in to Blythedale Children's Hospital with a breathing tube and on a ventilator. Today he is walking out carrying his bag on his back.


Every day he takes my breath away. I can still close my eyes and take myself back to the day when I had no idea if I would ever see him again. The real Jason. The Jason that is telling me now that for the last 16 months I skated on his allowance.


There are not enough Thank you's in the world to express the love and gratitude I have for all of you: my beautiful caring readers. You have donated to his page, brought me food, sent me cards, wrote me letters, left your comments, and most movingly prayed. You prayed so hard for me to have back my boy - and you have no idea what that has meant to me. You were the strength that carried me at times when I was weak. Jason has made a complete turn around through the Grace of God and the strength and persistence of those that love him.


I gave my usual early morning call today Blythedale, to check on Bruce Banner. I cried with Amy on the phone. I realized today saying goodbye to everyone at Blyethdale is going to be super, super hard. I am going to miss so many wonderful men and women who took care of Jason and helped him under some of the most strained circumstances.


Jason w/  his second mom "NURSE JEAN" and his Fearless Nurses Aide "Diana"

. Preparing my eyes for all of the expected leakage. But I will spare you all that drama on this forum. This is the end. The last entry in the campaign to PRAY4JASON.


Amy, one of the amazing nurses at Blythedale told me she said goodbye to Jason just a few minutes before my call,
"Jason take care of your mom. She never gave up on you",she said between sniffles.


It made me cry, and I guess her words, as emotionally charged as they are, are the best ones for this moment:
That is how I am ending this blog.
Never Give Up.